9/29/06 - First Shopping Trip

We took Cedie on her first trip to the store! We went to the Super Target by Nana's house. It was after 8pm so I decided to leave her in her car seat and put it in the basket (as opposd to getting out her special stroller which offers no head control should she fall asleep). She was wide-eyed the whole time we were there. She was facinated by the lights.

This is such an important step in a girl's life :-)

Day At Pulmonology Clinic

We spent all day Thursday at the Pulmonology clinic. Our appointment was at 9:30 but we didn't get out of there until 2pm.

It actually went really well. Her doctor was happy with her progress so far. We let him know that we were doing 14 hours per day on CPAP and she was handling it well. They tested her CO2 and O2 sats and both were great.

Therefore, he has decided that Cedie is ready to do CPAP at night as well as the day. The goal is to be on CPAP 24/7 by the time we go to see him again in six weeks. We will start off doing CPAP 1 out of 3 nights for 2 weeks. Then 2 out of 3 nights for the next 2 weeks. The 5th week we will do 3 nights on and 1 night off. The last week prior to our appointment we will try keeping her on CPAP day and night for the entire week.

This plan has me nervous, naturally. She has never been able to tolerate that much time without being on a breath rate (CPAP). However, her doctor really feels she is up to this and this would get us so close to our ultimate goal- no ventilator period!

Well, Cedie has started to put my doubts to rest! She started CPAP at 8:30am Thurs. morning. As of noon today (Friday) she is still on CPAP and doing better than ever! Overnight and this morning she has shown zero signs of distress and her sats have stayed between 97 & 99.

GO CEDIE!!!!!!!!!!!

Interesting Article

Follow this link to read an article about another CHARGE family with a 16 month old baby girl. There's some good info.

http://www.yorkregion.com/yr/yr4/YR_News/People_Profiles/story/3700256p-4277309c.html

Not Our Week- Trouble at the Mock House

It has not been a good week here at the Mock house (to say the least!). I guess you could say the trouble started Saturday.

Sat. we found out that our a/c unit is leaking. How did we figure this out.... The wooden laminate flooring in both Cedie and Dylan's rooms is buckling up! Apparently the drain in the a/c unit closet was clogged. The closet is in the hallway between the kids bedrooms. Cedie's dad spent a lot of $, time, blood, sweat, etc. doing these floors back in April. And now that he is in that knee brace, there is no way he could do it again right now.

Sunday was the big ER fiasco.

Monday we found out that the home owners ins. would pay to have someone fix the floors but that we would be responsible for the $500 deductible -not something we currently have :-( Also, the repairs will take 2-3 days and we will have to take Cedie somewhere else to live those days. (The kids and I will be staying at Nana's)

Tues. morn I found that my purse was stolen right off of my kitchen table! It turns out that Mon. night, while Chris and Dylan were gone to soccer practice, someone came in my house and took the purse. Cedie was in a swing asleep in the living room. I was going back and forth from working in her room (rearanging furniture) and checking on her. My house alarm didn't beep because I had both of the wooden doors that lead from the outside into the kitchen/dining room open. I had heard the dogs barking but it didn't register at the time. In my purse I had my wallet with a checkbook, debit card, & cash, I had an IPOD, a digital tape recorder, some insurance papers on Cedie, pictures, and all the other usual stuff us ladies keep in our purses. The thiefs used my debit card several times Monday night.

WARNING!!! The police told us that this is becoming a big problem in this county. These theives are driving into neighborhoods, stealing credit/debit cards and then going into the poorer parts of the city to gas stations. They then offer to fill up cars for cash. According to the police, when ever they catch people doing this, both the person with the stolen card and the person getting the gas go to jail.

Anyhow, yesterday I had to go get a new drivers license and we had to close out our bank accounts and open new ones. Not a fun day. Very scary.

Today is a new day and hopefully our luck will turn around. Cedie had a really good night last night and she was very happy this morning. She looked much better as well.

9/25/06-Feeling a Little Better

Cedie had a good night. We let her sleep in her boppy pillow in hopes that she not have the coughing spell when she wakes up. It seems to have worked! She awoke around 6 am. She coughed a little but it wasn't near as bad.

We went and saw our pediatrician this morning. She looked over yesterday's lab results and examined Cedie. She said that she also believes Cedie has tracheaitis (sp?). She was impressed, however, with how well Cedie was breathing. She said her lungs sounded good. Cedie was on CPAP (we put her on a little over an hour before the appointment).

She just wants us to continue on with the antibiotic that we got yesterday for the next 9 days.

We could already tell Cedie was feeling better this morning. Also, her temp at 8am was normal- no fever! Hopefully she is on the mend.

9/24/06- Day at The ER

Cedie awoke at 4am this morning with the same coughing spell she has had the last 2 mornings. However, this time was much worse. She was dropping her O2 sats and crying. Her nurse came and woke me up at 5:30. Together we tried everything I could think of to get her to stop coughing. By 6:45 I called the doctors office. She was just so miserable and I ran out of ideas. She can't take any OTC meds like benadryl, dimetap, etc. because of all the other meds she is on. Ofcourse, the on call nurse didn't know Cedie and all she could say was take her to LeBonheur..
So, we arrived at the ER just before 8am. They took us strait back. Ofcourse, by this time she wasn't coughing. They hooked her up to their monitors. Her O2 sats were 96-99. Her respiratory rate was good and her heart rate was alot lower than it had been at home. However, they took her temp at it was 102.6. So, they took blood samples from her foot via an IV (which blew before they could secure it- very Cedie). They took her to get a chest x-ray (see picture above). The thing they put her in for the x-ray looked like a torture devise! She is sitting on bicycle seat (actually she is stradling it). The tube like thing surrounding her is keeping her arms up straight. She didn't fight it too much (she was too wore out from the fever) but she sure sounded pitiful with her whimpering :-( After that they had to do a catheter to get a urine sample. Basically, they were just mean to the baby! The results from all of this told the docs that she has an elevated white blood count and tracheaitis (sp?).

Therefore, they gave her two shots of Rocefen (sp?) - one in each leg. They agreed to let her go home with us as long as we saw our pediatrician on Mon. and kept our pulmonology appointment on Thurs. We did not walk out of the hospital until 3:30 (7 1/2 hours later!!). But atleast we all walked out together.

Its a good thing they let her go home b/c although she was exhausted, she refused to sleep while we were there. Every time her little eye lids started to drift down, she would shake her head "no". Sometimes she shook it so hard that it shook her whole body. We got home just after 4pm. I fed her and gave her another breathing treatment and then she was out. She didn't not wake up until 6am the next morning.

9/22 & 9/23- Temperatures Rising

Cedie woke up early Friday morning with a low grade fever. We gave her Tylenol & Motrine (alternating) every 4 hours but her temp stayed between 100 & 101 all day. She had a coughing spell that lasted about an hour around 8am. Otherwise, she seemed okay, just a little clingy. She handled her CPAP fine, as usual, and she didn't seem to be in any respiratory distress. She was supposed to have a PT session in the morning and a ST session in the afternoon but we cancelled both.

Saturday went much the same way. Temperature all day. No respiratory distress. Clingy. Saturday morning she had the coughing spell again around 7 but then she was okay the rest of the day (besides the temp). We suspect that she may be getting some more teeth (she just has the 4 she got in June).

Unfortunately, I could let her attend her TCU reunion party at LeBonheur. We really hated missing the chance to see some of her old nurses, doctors, and friends. Guess there is always next year. We just couldn't take a chnace of making her worse, especially since we don't really know what is going on.

Mock Family Update from Cedie

Well everyone here is just about over our sicknesses. Mom still has a stuffy nose and I have occasional coughing spells, but not too bad. Big brother and daddy aren't sick anymore but daddy hurt his knee real bad playing softball. He has to wear a brace for 2 weeks. He can't even drive! I gave him lots of loving last night. I sat in his lap for at least an hour and I played with his arm hair and gave him sweet kisses & smiles! Mommy laughed at how happy I was!

Yesterday was my 1st day of doing 12 straight hours of CPAP. I handled it like a champ! Go me! I will do 12 again today and then tomorrow I will do 12 during the day and 2 at night!

I had OT therapy on Tuesday but I wasn't much into it this week. I was really tired. I should have ST today and I have PT tomorrow. On Saturday we are going to the TCU reunion at LBCH. Should be fun!

9/18/06- No Longer the Perfect Patient

Today we had an appointment with Cedie's endocronologist. He is following her hypothyroidism as well as her growth delays.

Cedie was in a good mood until I laid her on the scale. She threw a big fit. She was good when I picked her up but then I had to place her on another table to measure her length-she hated that too. (Her weight at the last visit-7/18/06- was 6.5 kg and this time it was 6.45, her height was 59 cm and is now 60 cm).

Once we were put in the room, she immediately started holding me tight. The moment I laid her on the table she threw a HUGE fit. Not even the paper on the table interested her. I picked her back up and we played until the resident came in. Cedie did not like her. She showed the doctor that even kiddos with trachs can scream and carry on :-) She was a little better with her regular endocronologist, but not much. Normally, Cedie is very friendly with all the doctors and she normally doesn't mind these appointments. I think she is still not over her shots from a couple weeks ago.

We talked about Cedie's lack of growth. Not only has she not gained in weight or height but her "soft spot" has not started closing like it should. They took some blood samples (which I am sure did not help Cedie's new fear) to check her growth hormone levels. We will also have to go back to LBCH for a 3 hour metabolic test soon. Most likely, Cedie will have to start growth hormone therapy.

Her thyroid levels, on the other hand, were good and we won't have to re-evaluate them for 3 months.

Saturday, 9/16/06

Cedie had her 1st in-home physical therapy session today. She has a really nice therapist and Cedie really seemed to like her. We tried Cedie on this big exercise ball! First we sat her on top of it (this challenged her balance) and then we let her do some tummy time on it! It was alot of fun but it sure did wear her out! She was sound asleep on the mat within 15 minutes after her therapist left.

We will now have TIPS on Tuesdays, OT on Wednesdays, ST on Thursdays, and PT on Fridays.

Team Cedie

I get asked alot how many doctors/specialists sees Cedie on a regular basis. The answer is 13. The visits are starting to space out and we try to just do 1 per week. The next 4 weeks have 1 appointment each week then we may get some time off...

PCP(pediatrician); Pulmonologist, Endocronologist, Otolarngology (ENT), Opthalmologist, Optomitrist, Cardiologist, General Surgery(for her skin graft), Audiologist, Physical Therapist, Occupational Therapist, Speech Therapist, and TIPS.

Keeping it in the Family- Yucky Colds!

It has definitely been a sick week at the Mock house.

This was supposed to be Cedie's first week of life with no doctor visits. However, that was short lived.

Tuesday, during her 12pm feeding, she had a big coughing spell. Her day time nurse was afraid she aspirated. She has had a lot of reflux issues here lately and we didn't want to take a chance so we went to see our pediatrician. She had us give Cedie her 3pm feeding while she listened to her stomach. Also, we dyed the formula blue (with jell-o) so that we would know for sure if it came out of her trach. All went well. She sent us home with a warning that should we suction any blue out of her trach, we were to take her to the ICU at LBCH.

Also, Chris (the best daddy) had to stay in bed all day Tuesday because he caught what Cedie and Dylan had.

Then comes Wednesday. Cedie was feeling much better. She handled all her feeds and had less coughing. She did 10 straight hours of CPAP with no problems. However, I woke up with the worst sore throat I have ever had! (I, like most of us moms never get sick- to much to do and too many people to care for). I was miserable! The problem was, I still had to get Dylan to and from school and work with the new nurse (it was her 1st day). Luckily, the nurse turned out to be great. Chris had to work until 10:30 at night so I had to get Memaw to come help me take care of the kids. Both kiddos were very good for mommy and liked having Memaw around to play with.

Thursday, we all were getting a little better. Dylan's nose isn't running anymore. Chris and I are able to take Tylenol Cold for our symptoms. Cedie had very few coughing spells and seemed much happier. She did her 10 hours of CPAP without a problem.

Its Friday now. My cold has moved from my chest & throat to my nose! I think Cedie, Dylan, and Chris are all better now. Hopefully, I won't start the rounds over again....

Quick Note on the Plight of Chargers

I know many of you Cedie fans also keep up with Mighty Max. His mom (an amazing lady) did a post today http://maxupdate.blogspot.com/2006/09/reality-check.html. As I read it, I could have swore she took the words out of my own head. I too keep up with the Charge Listserv and I got the same feelings she did.

I am now echoing the request she has at the bottom of her post...

"With tears in my eyes, I ask for a special prayer today for Mighty Max and all of his friends. Please pray for peace, understanding, strength, comfort, joy and love for all of our CHARGE families. Ask the Lord to help us understand why this happens to such amazing children. Ask the Lord to please grant us the wisdom and strength to know how to handle the many decisions and struggles of everyday CHARGE life. Most importantly, ask the Lord to keep his loving arms around us so that we never give up the faith and remain steadfast in our love for him and the dedication to our children."

If you haven't read about Max, you should. He is an amazing kiddo and he and Cedie are alot alike. One day, his mom and I hope to let these two incredible children meet. They can compare war stories and battle scars :-)

Girls Night

One of our close friends from LeBonheur came to visit with us tonight. She and I decided to show Cedie what we girls like to do when we've been feeling a little under the weather.... pig out and pamper ourselves (while gossiping ofcourse :-) )! We ordered pizza (that is a cheese stick in Cedie's hand in the 2nd pic). Then we pampered Cedie by playing with her hair (see the new bow I got her this weekend? it is 1 of 9 that I got at the Germantown Festival- I was so excited to find something that would stay in her hair). We also painted her finger and toe nails for the first time ever! It was so much fun!

I love this last picture of her and her girraf. It looks like she is hiding :-) She is actually using it to help her sit up on her own. Isn't she smart!

Not Feeling So Good

Cedie had a sort of rough weekend- not the worse by far but not fun either. She has this persistent cough that looks like torture on her little body. Her secretions have increased quite significantly. Her reflux problems are alot greater in frequency and intensity as well. She is having trouble with her O2 sats as well.

We think it may be allergies or sinus because Dylan's nose has been running for a week and several times over the past week Chris and I have had sinus headaches and drainage. But bless her little heart- what is just a nuance for the rest of the family can be so traumatic for her.

I talked with her doctor's office this morning. Since she has not ran any fever, they didn't want her to come in to the office. They said they were swampped with sick kiddos and they certainly didn't want to make things worse for Cedie. They want us to increase her breathing treatments and adjust her feedings while she is congested. Hopefully this will work. The nurses and I are just scared that she will go from bad to worse if we don't knick it in the bud now, so to speak.

She has been doing so good here lately (with the exception of the growth issue). We want to continue to see her thrive.

My Newest Trick

Lately I have not wanted to stay still! I love being on the floor. I can now roll from my back to my stomach and from my stomach to my back. I often get myself all tangled up in my vent hoses but that doesn't bother me! My vent alarms go off all the time while I roll all over the floor but it doesn't bother me like it used to. I am getting so big!

9/6/06- Pediatrician Visit

Today Cedie had a 15mth checkup at her pediatrician's office. She had to get 3 shots :-(

Cedie is now 25 inches long. (she was 23 back in July) She weighed 14.3 lbs (last month she weighed 14.8 lbs. Like the pulmonologist, Dr. Best is starting to worry about Cedie's lack of weight gain. She has decided to add an additional feeding to Cedie's diet (she was getting fed at 6a-9-12-3-6-9p and now she will also get fed at midnight). Hopefully this will help.

Otherwise Dr. Best was impressed with Cedie's progress. Cedie is up to 10 hrs per day on CPAP and she is moving like never before :-)

Cedie's 1st Trip To The Zoo (9/4/06)

On Labor Day, we took Cedie to the Memphis Zoo for the first time. The weather was perfect: enough overcast to keep the sun from hurting her eyes and a better temp than one can ask for.

There were 10 of us sharing this special day with Cedie. All of us (except for our nurse who took the pic-tks Joan!) are in the top left picture together. From left to right: (top) Becky, Lynda, Me, Chris, G-daddy, Great Grandmommie, Nana, (bottom) Cedie, Dylan, and Aunt Mel Mel. Becky and Lynda are G-daddy's two sisters from St. Louis. Great Grandmommie is G-daddy's mom, also from St. Louis.

Cedie loved the new panda exhibit. In the picture of her and my aunt Becky, she was at the panda exhibit, laughing at the Chinese laterns swaying in the wind above her head.

The new polar bear/sea lion exhibit was also really cool. They had a big bubble that you can climb in and be right there under the water where the sea lions swim! Dylan and great grandmommie are posing in the bubble in the picture above.

Cedie tolerated the whole experience extremely well. She never once fussed about being in her seat. She had a happy look of amazement the whole morning. We all truely had a wonderful time together and we were so blessed to share the special occasion with our Cedie.

Cedie and her Great Grandmommie

I just love this picture of Cedie with her great grandmommie from St. Louis. This picture was taken on Tuesday night, 9/5/06, at the gathering my parents held after the funeral services.

Saying Goodbye to a Great Man

I am sorry that I haven't posted in a week. You see, late last Tuesday night, Cedie's greatgrandfather (my father's dad) Mr. Charles Robinson of St. Louis, MO, formerly of Memphis, TN left this world to be with our Father in Heaven. Words can not express what "Pawpaw" meant to our family, as well as to all the people he met throughout his life.

Although Pawpaw's health has been failing these last few years, he managed the long trip to see Cedie twice. Nothing could stop him from being with Cedie after her first major surgery when she was in the NICU and he refused to miss her first birthday celebration (see the pictures above, taken on 6/17/06). Family was very important to him. He is survived by his wife of 60 years (the BEST grandmother I must say!) Ruby Lynchard Robinson, his three children: Lynda, David (aka G-daddy) and Becky, his five grandchildren: Scott, Me, Kori, Melanie (aka Aunt Mel Mel), and Matt, and his 3 (4 by November) great grandchildren: Dylan, Cedie, Zakery, and Kori's soon to be born baby boy.

We had his funeral yesterday, Sept 5, 2006. They had a memorial service in St. Louis Friday (9/1/06). My grandmother, my dad's 2 sisters, and lots of my grandmother's brothers and sisters came to town for the funeral.

Although we will all miss him terribly, we know he will always be in our hearts and he will be smiling down at us from Heaven.